Noah's Peripheral Vision loss from surgery

Some of you have been asking how Noah is doing.  As his parents we think he is doing great!  But from the outside looking in, people might differ their opinion.  Noah has a large loss of his peripheral vision.  Most of his left side peripheral vision he can't see.  Even though he is adapting quickly, there are times he runs into stuff he didn't see.  There is a good likely hood this will not return, but he may gain some of it back.  Only time will tell as his body heals and grows.

Noah's First MRI after 2nd Surgery

I apologize for not posting this earlier, but like everything else, time is flying by so quickly.  And it is easier to forget to post the good news.  Anyways, Back on Nov 9th, 2012 we had MRI Clinic day.  This is a scheduled day that the doctor's at Hershey dedicate to MRI and reading the results the same day.  So at 8 AM Noah had his MRI, and like many of the other MRIs he did it like a champ!  In and out within 30 minutes.  But this time, we had almost the entire work day to wait until his appointments.  And due to his Surgeon being on vacation, and because of how quickly the occurrence came back, they had us scheduled with the 3 doctors.  It was suppose to be at 2.30pm, so we show up at 2 to check-in.  But we wait, and wait and wait, just to get a room, somewhere between 2.45 and 3 we get a room.   And then we wait, and wait and wait.  Until almost 3.45 when our Oncologist comes in the room.

Both Tiff and I thought the same thing, -oh no, it's back-, why would you send in the oncologist.  Why because he is a great guy, likes to give good news every once in a while.  He introduces himself and asks how we are, I say nervous... He quickly responds with, it is good news!

There is no signs of another occurrence.  We went along with the appointment with the Oncologist and the Neurologist.  And made the phone calls and posted it to facebook as soon as we got out of the appointment room.

What a relief, next MRI check-up  in 3 months (February 2013).

Noah's Post 2nd Surgery Follow-up Treatment

The last 6 weeks have been extremely hard, with the tumor coming back so quick the doctors at Penn State Hershey recommended that we follow-up surgery with some sort of radiation treatment.  There is a treatment called gamma-knife and that sounded so obvious (from a non-doctor point of view) to use.  Three out of the four doctors recommended it, went over it with us.  But the fourth met with us, gave us a heart felt discussion on how he believes Gamma Knife wasn't enough, that we should consider proton therapy (another radiation treatment delivered at CHOP - Philadelphia).  At the end of that appointment we agreed that CHOP should review our case and we believed we were headed to Philadelphia.

I actually started this blog post before we got the final review from CHOP, I had all the descriptions between Gamma Knife and Proton, trying to figure out which treatment is best for Noah.  But after what seemed like months waiting for CHOP to review our case, came the call I wasn't expecting.  The treatment which I thought was out of the question.  CHOP IS RECOMMENDING WE DO NOTHING; or better put wait until his next MRI to decide on how to move forward with treatment.  The believe that because the pathology didn't change between the two tumors, and that each 6 months you can wait before treating with Radiation will help the brain develop.

So for right now, we are waiting 6 weeks until his next MRI.  The Hershey doctors are suppose to be reviewing what CHOP did and recommended.  And if any of the doctors reviewing his case objects, we will get a phone call and hear why.

I am actually a little relieved, Noah seems so healthy and to put him through any radiation scares me.  The point of surgery, in his type of tumor, is to remove the entire tumor and that (in theory) should be it.  I am also relieved that CHOP basically did a second opinion on his case, the reviewed everything including the pathology.  They agreed with Hershey on the pathology, which gave us some relief.

So there it is, a short version of what has been stressing us out for the last 6 weeks.  Event though the stress hasn't left, we don't have to worry if we are making the right decision on adding radiation to a benign tumor.  But we are waiting again, waiting to see if it is coming back, waiting to see if we got it all this time, waiting, waiting, waiting.

For all of you following his (and our) story, please keep us in your prayers, good thoughts and good mojo.  In approximately 6 weeks (maybe 7) we will find out if we made a good choice of waiting.

Until then...

Noah's Spinal Tap (after 2nd tumor) Results and his recovery

On September 4th Noah had to have another spinal tap to make sure the re-occurrence of the tumor didn't spread into the spine and spinal fluid.  Like every other obstacle Noah has had to deal with he just rolled right through it.  Last Friday we got the results back showing his spine is still clear from any tumor cells.  This is great news!  We are continuing on the path we thought we were headed.

His recovery from his second surgery seems to be going so much quicker.  He only missed the first day of school due to the spinal tap.  And he is still loving school, even though he can't participate in recess or gym.  He incision is looking really good, and his hair is growing over it.  With as healthy as he seems it has been difficult keeping him under control.

Noah's surgery take 2

On August 13th, 2012 Noah went through a second chraniotomy within 4 months, the night/day before the 4 off us decided to come to the Harrisburg/ Hershey area to have some fun.  We left Bellefonte around 10am and went to capital city mall to visit build-a-bear.  Noah built Syd the sloth and Sydney built teddy bear.  From there we met Tiffany's family to eat and enjoy a night playing miniature golf and some arcades.

Any ways on the morning of his surgery we had to be in the hospital at 5.30am, and at 7.30am the took from pre-op to surgery.  At 11.30 am our surgeon (Dr. I) came out and talked to us.  And the basic news is that surgery went as planned, but he reiterated that because of how quickly the tumor reappeared that follow up treatment will most likely be needed.  Follow up treatment could be radiation and/or chemo.  But we need to wait 2 to 3 weeks until pathology results come back and his brain heals before deciding on exact treatment.

Noah's 3 Month MRI Check-up results

Words can't describe the disappointment I felt when the doctor told me a small growth is back.  I can barely remember the conversation with the doctor, and Noah during the entire time was playing a game "Minecraft Pocket Edition".  It is amazing how smooth kids take the news, but Noah did show more emotion this time calling it a "stupid brain tumor".

Anyways, today July 30th, 2012 we got the news there is a small growth with fluid pockets.  He will need surgery again (anytime between now and 4 weeks), and the doctor will be discussing the possible treatment afterward.  Yes there is a possibility he will need radiation or chemo this time around.  With the previous tumor having a 10% grade 2, the thought being this might be a little more aggressive tumor then first thought.

Unfortunately that is all I know for now.  I am emotionally spent and torn from the inside, that being said we only got the news today of the growth is back.

Until next time....

Noah had a brain tumor - pathology test results

It has been a while since I blogged about my son's experience with his brain tumor.  We anxiously waited the pathology tests for almost a full week, that is relatively short, it made us nervous.  The results were 90% benign, 10% grade 2.  Grade 2 means there shows some aggressiveness to it, but not a grade 3 which is considered cancer.  At this point in time there are no reasons to further treat him in any fashion.  We just need to wait until the 3 month MRI check-up.

Noah has a brain tumor - part 1

On Monday April 23rd, 2012 my day seemed very normal; I stayed at home with a sick Sydney but had a great day because we snuggled and played most of the day. But after Noah's school day he had to go get an eye glasses check up, which that appointment changed my life forever.

Lets start back a year earlier, he was in kindergarden and he failed his eye test, therefore, with his mom having all her eye troubles we sent him to an optometrist. Where they said there was some eye change but not enough for glasses and to come back in each year for annual checkups. That brings us into February of 2012. Where there was enough eye change to warrant glasses. He then got his glasses in march. Shortly after that he started getting headaches. Then 3 or 4 times he got severe headaches where it would knock him out for 13 hours straight. He had headaches any time of the day, but no other symptoms. Tiffany got concerned and took him to the local pediatricians, where they noticed a sinus infection and said there shouldn't be any concerns but we should follow up with a neurologist. We choose Penn state Hershey, but the first available appointment was in august.

That brings us to that Monday appointment. Sydney, Noah and I went to his appointment. Sydney was a trooper, Noah was even better. After the eye docs looked over him they mentioned there is a small change in vision. Where in turn I describe the headaches he has been having. The group then looks deeper into him, first with out eye drops, then with dialiting drops. We want to run more tests they say. With moms history, I am not concerned. After the tests they describe the optical nerves are swollen. And we should follow up with a nurologist. I described we have an appointment in august, "No, no,it has to be sooner" Dr. Talone said. We will get you an appointment tomorrow. Again I'm worried but not overly concerned. We leave the appointment have our normal busy life. But our stomaches drop when Dr. Talone called and said he has been working with a nurologist and Noah needed to go to the E.R as soon as possible. Tiffany took him up, and at midnight I got the dreaded call.

Noah has a mass in his head. Approximately 8cm by 4cm is this growth. This is at 11.45pm. Sydney is sleeping. Luckily we moved home, tiff's aunt came over and stayed with Sydney. Myself and my mom rushed to the hospital. I couldn't stop crying. By the time nanny and me made it to the hospital they gave a better diagnosis. Mount nittany hospital crew described it horribly now that we know more. They gave us a false hope. But it gave us enough hope to sleep some hours that night. Also, mom described to me how well of a trooper Noah has been. He laid still for an hour with out sedation in the MRI. He got an IV no problem. An he laid their sleeping while I weeped over him. We were free to go knowing that we would receive a call in the morning, by noon, from Penn state Hershey.

Noah has a brain tumor - recovery after surgery - part 5

After falling a sleep "early" compared to the nights before, I woke up early and went to visit Noah.  He was already awake due to the Doctors and Nurses checking on him.  He was very calm and relaxed for being 12 hours out of major surgery.  Between having the catheter in and wanting to be in his original room he had moments of distraught.  Overall he was amazing!  He was a very easy patient as our PICU nurse described.  He went in and out of sleep most of that day which was good because they had an after surgery MRI scheduled, therefore, he couldn't eat until they did that again.

One major thing kept setting him off.  He wanted to see his sister Sydney.  And somehow in the waiting room the same was happening. His sister wanted to see her big brother Noah.  Them both saying the same thing broke our heart.  I still tear up today thinking of that short time they spent apart.

To help Noah stay focused we kept the next goal verbal (ie. get the catheter out, eat, pee, etc).  And that made that day (12 hours) go decently fast.  It was shortly after dinner the following day they moved Noah from PICU to ICU room where his entire family could be visiting at one time.  And Noah and Sydney got to see each other again!  It was harder to keep the next goal in mind because he really just wanted to go to his original room.  Keeping him focused on healing and feeling better was difficult.  He got to the point he didn't want to talk to anyone and rather pretend to sleep or ignored us while watching TV.  Luckily he kept on improving and only had to spend one night in the ICU.

That next day, Saturday - 2 days after surgery, they wanted him up and walking.  We first started with a walk from his bed to the hall way to a wheel chair.  That helped with his social interaction.  Getting out of bed and feeling free lifted his spirits.  It also helped speed up the day.  By the end of Saturday he was eating and drinking.  He fulfilled all the requirements to leave the ICU.  He got his wish to move to the "floor", what the ICU nurses called the other wings of the children's floor.

Once we moved out there, he was the opposite compared to the ICU.  He would talk to us more, he would just have short periods where he didn't want to talk to people.   Even though most of Saturday he was doing good, he just didn't seem himself yet.  Sunday morning bright and early the doctors came through and said that if we were ready we could be discharged that day.  And I requested that we spend at least one more day in the hospital because of him not really being himself yet.  And the doctor was OK with that.  Both my wife and I were glad we did.  Noah came out of his shell on Sunday, showed us that he was back.  Sunday was a filled with lots of visitors.  And if no one could tell, Tiff and I were exhausted.  Because there was so many visitors, I went back with Sydney and took a nap (2 long hours).

On Monday, they released us before lunch.  And the first thing we did is we went to the closest McDonald's and had lunch.  During lunch Katie Gearhart and her parents, who was in Hershey for her own check-ups, stopped and visited Noah.  And Noah was doing real good so we decided to stop at Hershey Chocolate world to give him something unique to do.

After that we went back to the Ronald McDonald house to clean-up and check-out and started our trek home.

Now we just had a waiting game for the pathology tests to come back.

Noah has a brain tumor - surgery - part 4

Tiff got the pleasure of sleeping over that night.  Noah slept pretty good, but got awake at 5.30am on April 26th and wanted to play monopoly with his mom.  Of course she did.  When I got here Noah was again acting a little short with everyone, gotta love those steroids.  But he quickly went in and out of those moods.  Thursday morning was very emotional day, I started to cry many of times but held back for Noah.  But when it came time to transport him to the O.R. and after I woke him up to move him to the transport bed, I then cried pretty hard in-front of him.  After the long (felt very very long) walk to the O.R., Noah again started crying.  Both Tiff and I tried to calm him down, but nothing was working.  I then told him there was a guardian angel watching over him today.  Pappy Benner would be here to help him after he separates from us.  Even though Noah didn't calm down 100%, he calmed down enough to let the transporter take him into the O.R.  And the long walk back to the lounge was very emotional and calming at the same time.  I am not sure if my dad's spirit was around but the calming feeling I had sure did make it feel like it.

I still feel guilty doing it, but the doctor said the surgery will most likely last 5 hours, so the family that was in town all went to eat and back to the Ronald McDonald's house.  Since we only packed for a few days we did some laundry rested and tried to keep our mind off of Noah.  But by 3.30 we were back at that lounge waiting for the doctor to come out.  The family looked through the gift shops, and had an unexpected visitor.  House of Representative Kerry Beninghof stopped by because he lost his little girl to cancer a few years before.  His kind words and history didn't make the situation any less stressful, but it did encourage us that we were at the right hospital.  At 5pm, we decided to request an update from the O.R.  but by the time the request made it to the O.R. Dr. Iantosca came out to talk to us.  But not ten minutes before that, I was stating that none of the doctors were using the doctor-patient room to have discussions, and my mom said they usually only use it when there is an issue.  And the first thing Doctor Iantosca said was I would like to discuss this over hear in private.  I felt the floor drop out from underneath me, I saw the faces on everyone else turn white.  But then Dr. Iantosca said it is good news, come on.

He proceeded to tell us how he was able to remove all the tumor, and the preliminary pathology tests were benign.  We all were relieved, but we still had to wait for Noah to be finished up and sent to recovery and then pediatrics ICU (PICU).

I gotta say my nerves had the best of me when we were walking up to the recovery room, I didn't know what to expect.  I didn't know what the night would bring.  With my tendency of getting light headed, I was afraid it would happen, and I didn't want it to I wanted to be there for Noah.

When I first saw Noah, with a catheter in, tubs hooked all over Noah, and 3 different IVs I could of probably fainted, but I didn't.  Noah looked pretty good for coming out of surgery, Noah mostly looked normal with a big bandanna on.  But in ICU, Noah continued to swell, first over by his ear, and then it continued to his eye and cheek.  The max swelling caused his eye to be swelled shut.  And being out of surgery, on steroids and a catheter in Noah was very distraught.  We entertained him with the tablet and TV.   Although most of his troubles was that he wasn't in the same room as he was.

All of his family that were in for surgery went into the ICU to see Noah.  Everyone did a pretty good at seeing him in this state, except uncle Matt.  Uncle Matt said he got weak knee'd, although nothing more.  

He fell asleep somewhat early and I crashed in the waiting room.  That was the first and only night he slept alone.

Noah has a brain tumor - part 2

At 7.30, April 24th, we received a call from Penn State Hershey's Pediatric Neurology group, informing us to come today and bring an overnight bag. Since we were still tired in bed and haven't told the news to Noah yet it took us a long time, about 2 hours, to get everything ready and leave. But first we woke up Noah to tell him the bad news. He took it very well. He did seem upset but within minutes he was playing with his sister in the living room.

We made it to Hershey's hope drive by 11.20 AM and had to wait a little to meet the the staff. But when the doctor came in and started describing what he saw. There was things he saw that concerned him that it may be cancerous, the opposite of mount nittany description. He described how he would have to remove it.  He believed it was Choroid Plexus Papilloma brain tumor, but would know more after the pathology tests.  He was a very great doctor interacting with Noah. He described how it needs to come out immediately, but it will take a couple days because of a follow-up MRI.  While he is describing this Noah is being a trooper, and dad got light headed.  I ended up laying down on the examining table while Noah sat in a chair.

After the staff setup the admission for Noah in the hospital we (7 adults, noah and Sydney  ) took him over.  The 7 adults were trying to keep their composure while Noah was skipping with excitement.  He was so excited to stay over and have an Xbox in his room.  Being the champ he is when it was time for an IV he had no troubles going and getting it done.  It took the nurse four times and he only teared up.

From the start of it we had great nurses.  The first nurse had Noah press the nurse button every time his IV pump started beeping. One of the aides would come and talk video games with Noah.  It was a special group of people. I felt that every nurse went out of her way to make sure Noah was comfortable, and each nurse had their own way of doing it.

The children's floor of Hershey was well setup and organized between staff, administrators and volunteers.  They had an end of one of the wings dedicated for a play area - called child's life, where the volunteers held two activities a day.  The first one we attended was visit PSU Men's basketball team, but before we got to walk down the hall way 2 of the players, head and assistant coach came into our room.  From the get go, you could tell the head coach was deeply into visiting the sick kids.  He reached out many of times to Noah to make sure he was getting extra attention.  After revealing that I worked near State College, he extended his personal email out for myself to contact him for anything.  Very touching!  After the coach and players moved on we went down the hall way to meet the other staff.  Noah was a little frustrated because they were shooting hoops, but he had an IV with wrap on his right (dominant) hand.  But after having one of the players help his mechanics he was able to make a shot.  We got to have the 5 players that came to the facility sign a towel and a ball, and Noah has been cherishing those items while in the hospital.

That all happened within the first couple hours after getting here and registering, we haven't even made it to the first night.  Of course before surgery Noah wanted daddy, mommy, and nanny to rotate sleeping with him in his room.  And it had to be in that order.  So I got to sleep on the bench seat they had designed for overnight guests.

Noah has a brain tumor - part 3

The next day, April 25th, Noah kind of slept in, but woke up very cheery.  He immediately wanted to play with me, I believe we tried to play Lego Batman on the XBox.  But on this day his mental challenge pre-surgery was the greatest, he had to fast (cannot eat or drink) while on steroids.  His 3 hour MRI test was scheduled for the morning so they requested he had nothing after midnight, but it got pushed back until after 1 o'clock.  By that time of day and them pushing pretty high dosages of steroids he was starving and letting us know.  One of the phrases he probably won't live down is that he was "100% hungry".  But overall he handled it very well in the condition he was in.  He also had a break down because he wanted to make a key-chain at the child life, but his MRI was going to interfere with making the key-chain.  But thankfully the volunteers brought the stuff to Noah's room to make the key-chain.

While Noah was in his MRI, we had 2 special visitors come to Noah's room.  It was the Executive officer, and chief executive nurse, they came down because Senator Corman made a phone call.  Senator Corman's sons played on Noah's football team that I helped coach.  I felt humbled that someone would use their professional power to make sure we were getting the best care the hospital could provide.

So as soon as he was done with the MRI he was able to decorate his key-chain and magnet, and the following day before his surgery he was able to make it into the magnet and key-chain one-on-one with the volunteer.  Also after his MRI, he was so hungry he ate most of his supper.  And had no problems with nausea.
By dinner time, the world new about Noah and our troubles, facebook.com is a great means to get knowledge out and have a faithful following for something serous as this was.  But it had a great impact on one of Noah's cousins (and good friend).  Lauren Benner earlier that day was told by her mom (Sue) the details that Noah was going through and during school Lauren became emotional on Noah's situation.  Lauren's parents thought it would be a great idea for Lauren to see Noah - and for Noah to see Lauren.  They were right, it was a great success, not only did it help Lauren out, but it helped Noah too.  It was great to see Noah as a typical 7 year old boy in the Hospital.

But again Noah had to fast beginning at Midnight because his surgery was scheduled for noon on Thursday April 26th.  So Wednesday night Noah stayed up later having snack after snack and ending it with a slice of pizza.  But before I left to go to the Ronald McDonald house, Noah had his first true breakdown; he started crying about not wanting to look stupid, he didn't want a scar on his head.  Tiff and I tried to calm him down but it took a good 45 minutes before he did.